Emerging ethical issues in patients with disorders of consciousness: A clinical guide

Clinicians who manage patients with disorders of consciousness (DoC) commonly encounter challenging ethical issues. Consciousness disorders include the vegetative state, the minimally conscious state, and covert consciousness resulting from cognitive-motor dissociation. The practice landscape of ethical issues encompasses making the correct diagnosis; making and communicating an accurate prognosis despite irreducible uncertainty; conducting effective shared decision-making with a lawful surrogate decision-maker to deliver goal-concordant care; providing optimal medical, rehabilitative, and palliative care across the spectrum of care sites: acute inpatient, neurorehabilitative, chronic, and palliative; respecting the human rights of and advocating for DoC patient, an historically under-served population and, when appropriate, properly participating in decisions to withhold or withdraw life-sustaining therapy. Research and translational issues in DoC patients include the challenges posed by emerging diagnostics and therapeutics and their prudential integration into clinical practice in the service of patients and their families. Our conceptual analysis of these ethical issues and our practical advice to address them comprise the subject material of this chapter.